That was my first thought, too. I guess the condition's name is pretty memorable.
It's been almost twenty years, so it shouldn't surprise me that new research means that people who died in the past maybe could have survived longer if we had known better. And, of course, Jordan was going to die some day. But I certainly wish he'd had more time.
b) drugs cost a shitload (hundereds of thousands/yr) to extend lifespan by...months
c) only for ATTR (not AL) amyloidosis
d) the drive to diagnose and treat only really started after tafamidis (1st drug with any effectiveness) was marketed...hmmm
e) the dude in the article used as an example was probably helped more by treating his afib than by the fancy drugs
for sure there are some genetically transmitted younger patient for whom this is important. But there are a lot of frail older people who are getting diagnosed with wild-type ATTR amyloid for...questionable benefit at massive cost. IMO, the jury is still out
Not sure what relevance the source has here, but it’s not correct. Primary (AL) is the most common in the developed world and secondary (AA) elsewhere. There are some foci of ATTR but it is by far not the most common.
I should have mentioned my wife is a physician, apologies.
The true prevalence of ATTR is not known since it's only been investigated for recently as described in the article. If you look up recent data you'll see a big difference.
“Fewer deaths” is a meaningless concept. Every human being inevitably dies. If you prevent someone from dying today, you have only delayed the inevitable. In some cases this is extremely valuable; if you save a newborn baby, that baby could live eighty more years. If you save a 77 year old, they will not live eighty more years. And if you repeatedly save elderly people from natural conditions that could easily kill them, their quality of life gets worse and worse over time as their bodies wear out and decay and the side effects of these interventions build up. Which is why the vast majority of doctors have DNR’s.
While this is logical, the more diseases of old age we cure the longer and better the quality of life the elderly get, and treating amyloidosis is one small step towards that.
It would be unethical to not email this comment to everyone in your family and friends that could possibly consider you as a person on their emergency contact list.
IANAD but I believe that Valtoren has the least side effects, but in general since they're all NSAIDs they have been tested for long-term analgesic use, so they're relatively safe and quite inexpensive.
It's incredibly good to see Medicare covers these drugs, considering how expensive they are. Meanwhile, my diabetic friend can't get their insulin covered by Medicaid...
Presumably your friend wants a particular brand of insulin, not the insulins that Medicaid covers because they are the most cost effective?
Medicaid negotiates with manufacturers to get the best price. When they are successful in securing a low price, they preferentially cover them.
Usually if the doctor can show why those brands aren’t good enough, Medicaid will cover alternatives that aren’t covered, but it can be a lot of work for the doctor.
> The Ford Model T sold for $260 in 1925, which is $4,056 in 2021 dollars.
I'm not sure I buy this conversion. It was targeting the middle classes (and on credit), and middle classes in 2025 could buy that cash. Working classes in 2025 could probably buy that cash, and definitely on credit.
The 1922 price list looks solid though, it's from a dedicated 1920s 'fan' site, but, again, I haven't personally verified or cross checked the numbers - it just seemed like an interesting bit of info to chase :)
http://archive.today/uTakY
Robert Jordan, author of the "Wheel of Time" fantasy series, died of this disease in 2007.
https://en.wikipedia.org/wiki/Robert_Jordan#Illness_and_deat...
That was my first thought, too. I guess the condition's name is pretty memorable.
It's been almost twenty years, so it shouldn't surprise me that new research means that people who died in the past maybe could have survived longer if we had known better. And, of course, Jordan was going to die some day. But I certainly wish he'd had more time.
it's not clear if he had ATTR or AL amyloid
a) average age is 77
b) drugs cost a shitload (hundereds of thousands/yr) to extend lifespan by...months
c) only for ATTR (not AL) amyloidosis
d) the drive to diagnose and treat only really started after tafamidis (1st drug with any effectiveness) was marketed...hmmm
e) the dude in the article used as an example was probably helped more by treating his afib than by the fancy drugs
for sure there are some genetically transmitted younger patient for whom this is important. But there are a lot of frail older people who are getting diagnosed with wild-type ATTR amyloid for...questionable benefit at massive cost. IMO, the jury is still out
What's with the kneejerk takedown?
a) Yes, it's more common in older people. A lot of old people end up in hospital
b) 30% fewer deaths and hospital admissions is a good thing in my book
c) The more common form according to my wife
> The more common form according to my wife
Not sure what relevance the source has here, but it’s not correct. Primary (AL) is the most common in the developed world and secondary (AA) elsewhere. There are some foci of ATTR but it is by far not the most common.
I should have mentioned my wife is a physician, apologies. The true prevalence of ATTR is not known since it's only been investigated for recently as described in the article. If you look up recent data you'll see a big difference.
“Fewer deaths” is a meaningless concept. Every human being inevitably dies. If you prevent someone from dying today, you have only delayed the inevitable. In some cases this is extremely valuable; if you save a newborn baby, that baby could live eighty more years. If you save a 77 year old, they will not live eighty more years. And if you repeatedly save elderly people from natural conditions that could easily kill them, their quality of life gets worse and worse over time as their bodies wear out and decay and the side effects of these interventions build up. Which is why the vast majority of doctors have DNR’s.
While this is logical, the more diseases of old age we cure the longer and better the quality of life the elderly get, and treating amyloidosis is one small step towards that.
It would be unethical to not email this comment to everyone in your family and friends that could possibly consider you as a person on their emergency contact list.
if you can't afford Tafamidis, you could probably get away with taking
- Flufenamic acid
- Valtoren (Diclofenac)
- Diflunisal
off-label.
https://www.benthamdirect.com/content/journals/cdtcnsnd/10.2...
IANAD but I believe that Valtoren has the least side effects, but in general since they're all NSAIDs they have been tested for long-term analgesic use, so they're relatively safe and quite inexpensive.
NSAIDs absolutely aren’t for long term use.
NSAIDs can kill your kidneys.
And your stomach lining. Even better if you’re already on a DOAC for Afib.
It's incredibly good to see Medicare covers these drugs, considering how expensive they are. Meanwhile, my diabetic friend can't get their insulin covered by Medicaid...
Presumably your friend wants a particular brand of insulin, not the insulins that Medicaid covers because they are the most cost effective?
Medicaid negotiates with manufacturers to get the best price. When they are successful in securing a low price, they preferentially cover them.
Usually if the doctor can show why those brands aren’t good enough, Medicaid will cover alternatives that aren’t covered, but it can be a lot of work for the doctor.
It's expensive because it's categorized as an "orphan drug". I have to wonder if the underestimation of the prevalence of CA was part of that.
>They are incredibly expensive, costing $250,000 to $500,000 per year.
No way they cost that much to make.
Big pharma is out of control.
The first dose costs billions to make, every dose after that might only cost a few cents. It all averages out.
You should've seen how unaffordable cars were 100 years ago.
The Ford Model T sold for $260 in 1925, which is $4,056 in 2021 dollars.
Prices were higher in 1922, and the Model T was basic and mass produced leading to a falling price.
Across the board, in 1922: https://www.1920-30.com/automobiles/1922-car-prices.html
> The Ford Model T sold for $260 in 1925, which is $4,056 in 2021 dollars.
I'm not sure I buy this conversion. It was targeting the middle classes (and on credit), and middle classes in 2025 could buy that cash. Working classes in 2025 could probably buy that cash, and definitely on credit.
The conversion isn't a hill I'd die on, it was sourced from a reddit economics thread as a bold assertion of fact:
https://old.reddit.com/r/AskEconomics/comments/q20fr4/the_fo...
The 1922 price list looks solid though, it's from a dedicated 1920s 'fan' site, but, again, I haven't personally verified or cross checked the numbers - it just seemed like an interesting bit of info to chase :)
Why don't you make some and sell it for a mere 200k?
The drug: https://en.wikipedia.org/wiki/Tafamidis